Upcoming PET scan & Xeloda question
rthornton
Member Posts: 346 Member
OK, so I have a PET scan very soon and also a flex sigmoid. All of this is to check for recurrence, after last year's 5FU + Avastin & Oxaliplatin caused my liver mets to go into remission. I was on 5FU for eight treatments, but the diarrhea was too much. Then we tried CPT-11 once, and the diarrhea was worse than that caused by 5FU. So, since last December I've been on an Erbitux + Avastin combination. I'll find out next week if it has been effective in preventing recurrence of any sort.
If there is a recurrence, then we will probably try Xeloda. I understand that Xeloda is an oral version of 5FU, but does it have the same side effects? If I had horrible diarrhea with 5FU would I probably get the same from Xeloda? How many pills does one take per day? Are there restrictions, like taking them with or without food, is it okay to take them with nutritional supplements, do they need to be taken at certain times of the day? These are questions I should have asked my oncologist today, but I didn't think of them until I had already left his office.
Any info will be appreciated. Thanks!
Rodney
If there is a recurrence, then we will probably try Xeloda. I understand that Xeloda is an oral version of 5FU, but does it have the same side effects? If I had horrible diarrhea with 5FU would I probably get the same from Xeloda? How many pills does one take per day? Are there restrictions, like taking them with or without food, is it okay to take them with nutritional supplements, do they need to be taken at certain times of the day? These are questions I should have asked my oncologist today, but I didn't think of them until I had already left his office.
Any info will be appreciated. Thanks!
Rodney
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Hi Rodney,
I was on Xeloda for 6 months following surgery. I don't remember how many pills I took, but the amount was adjusted depending on side effects. The main side effect for me was hand-foot syndrome ,cracking and peeling of hands and feet. I also had a major problem with ingrown toenails and had to visit the podiatrist regularly. I was able to work full time teaching toddlers which is physically demanding and attend graduate school.
I am currently on Folfox including 5FU and Oxaliplatin, but no Avastin for a recurrence in my lung. I am now doing session 10 out of 12. The side effects are different for me. I am completely wiped out and on disability and not attending school this semester. I have neuropathy, but not hand-foot syndrome. I have not had a problem with diarrhea with either chemo so I can't help you with that. I tend to be more constipated. Folfox really reeks havic with my colostomy. No matter how I eat or what I take it just doesn't work well with chemo. Chemo brain is definately worse with Folfox.
I took Xeloda in the morning and the evening I believe after eating. It was very convenient because I could just bring the pills with me wherever I went. There were some supplements that I was told not to take, but don't remember what they were. I would check with my doctor.
I hope that your scans are good and you don't have to take Xeloda. I'm sending positive thoughts and energy your way.
Jamie1 -
Rodney - good luck on your PET. I know it will be so good that you won't need any Xeloda.
In theory Xeloda has fewer and more manageable side effects than 5FU (although there is always that caveat - everyone is different). I was on 2000mg of Xeloda (4 tablets) twice a day - you take it for 2 weeks, then 1 week off. Was supposed to take within 30 minutes of eating. The major side effect was episodic diarrhea, but usually only the first week I was on it and Immodium worked. When I began to experience minor skin peeling after 3 cycles, we skipped a couple of weeks before starting the next 3-week cycle. Then my dose was reduced from 2000mg twice daily to 1500mg twice daily. That solved the skin problem (which wasn't bothering me but was really bothering my doctor since she knows it can get bad). But big bonus - it also solved the diarrhea. So my last two cycles involved almost none of that.
Hope this helps. (And really hope you don't even need to know this!)
Betsy1 -
Hi Rodney,
I was put on Oxaliplatin and Xeloda in Dec. 04. I was taking 3000mg of Xeloda (1500mg in the morning and 1500mg in the evening following meals). My dosage has been changed several times during the course of treatment to adjust for my side effects.
At the higher doses I experienced peeling of the skin on my feet (hands were only mildly affected) and raising of the toenails from the nail beds which resulted in the loss of my toenails. After I finished with the Oxaliplatin + Xeloda, my doctor put me on a combo of Xeloda + Celebrex.
The diahrrea was mild for me and totally controllable with Immodium, no nausea. I much prefer the Xeloda to 5FU - I had harsh side effects with the 5FU, Leukovorin, CPT11 combo.
Good luck with your PET scan. If you have any other questions about Xeloda, email me here at this site. I am still on the drug and doing well with it.
Kerry0 -
Um ... that's funny ... you accidentally typed in the words "and raising of the toenails from the nail beds which resulted in the loss of my toenails." Ha ha ha ... ha ... ahem ... I know it was a typo because that's just pain sadistic and no drug would have a side effect that would make my toenails fall off. Please understand that I can have nightmares for a week if I see that damn Lamisil commercial with the cartoon infection-character that lifts the toenail and crawls under it. That side effect seriously freaks me out.kerry said:Hi Rodney,
I was put on Oxaliplatin and Xeloda in Dec. 04. I was taking 3000mg of Xeloda (1500mg in the morning and 1500mg in the evening following meals). My dosage has been changed several times during the course of treatment to adjust for my side effects.
At the higher doses I experienced peeling of the skin on my feet (hands were only mildly affected) and raising of the toenails from the nail beds which resulted in the loss of my toenails. After I finished with the Oxaliplatin + Xeloda, my doctor put me on a combo of Xeloda + Celebrex.
The diahrrea was mild for me and totally controllable with Immodium, no nausea. I much prefer the Xeloda to 5FU - I had harsh side effects with the 5FU, Leukovorin, CPT11 combo.
Good luck with your PET scan. If you have any other questions about Xeloda, email me here at this site. I am still on the drug and doing well with it.
Kerry
Anyway, thanks for the info and the good wishes. Now I think that fear of losing toenails to Xeloda will keep me in remission for many decades.
Rodney0 -
Rodney,rthornton said:Um ... that's funny ... you accidentally typed in the words "and raising of the toenails from the nail beds which resulted in the loss of my toenails." Ha ha ha ... ha ... ahem ... I know it was a typo because that's just pain sadistic and no drug would have a side effect that would make my toenails fall off. Please understand that I can have nightmares for a week if I see that damn Lamisil commercial with the cartoon infection-character that lifts the toenail and crawls under it. That side effect seriously freaks me out.
Anyway, thanks for the info and the good wishes. Now I think that fear of losing toenails to Xeloda will keep me in remission for many decades.
Rodney
Keep 'em clean and the little fungus guys won't crawl into the space....
Besides, they grow back....believe me when I tell you I am very vain, have lots of cute little strappy sandals and went completely berzerk when my nails came off, not to mention my manicurist had a total nervous breakdown. Anyway, ask yourself - cancer? or toenails? well, for me the answer was easy, I can live w/o toenails, I don't want to have cancer!!!
Best of luck to you Rodney. It certainly a journey, isn't it?
Kerry0 -
Hi Rodney,
I just had to add to the toenail thing. I agree with you, that commercial gives me the creeps also, but I would have done better if my toenails had fallen off and grown back normally, then to have to deal with ingrown toenails repeatedly that have never grown back normally. Besides Kerry is right, cancer versus toenails, I'll take loss of toenails or funny looking ones anyday!
Jamie0 -
I was on Xeloda and CPT-11 for my second round of chemo. I never had the diarrhea problem, I had the opposite problem, wierd I know....but I had rabbit pellets the whole time! The main problem I had w/ Xeloda was the hand and foot syndrome. I am a forest ranger and I usually hike about 10-15 miles/day so I get blisters and peeling and stuff like that and it's not a good summer if you don't loose at least one toenail! But I have never had anything like the blisters I got from Xeloda. I am sure my hiking did made the whole experience 1000X worse than it would have normally been. Eventually I had to stop backpacking and could only do day hikes because the weight of the pack was making my feet much worse. I had to cut down on my doseage and get rid of the weight. So if you are a bigtime runner or backpacker you might find Xeloda troublesome, otherwise you will probably be fine, just a little tender. I did have the nastiest toenails you ever saw, but luckily I am a girl, so I just got pedicures!!0
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Xeloda
Rodney
I took Xeloda for three months and never had any bad side effects except for some sleepiness at times.... I thought it was a breeze...never even suffered the dry skin...Best of luck to you....1
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